Our Endo ONLY looks at the Clarity data when having discussions with us. And she’s always telling us that we need to work on our severe low percentage. And as much as I would love to have a severe low percentage of 0.0%, this isn’t practical because that requires perfection in every sense, which no one is. In the past 3 years, the best I’ve managed to bring that severe low percentage down to has been .6%. I’m really struggling to get to .4% (according to the data uploaded into Clarity), because that data just is NOT accurate for us…
So what happens is that we go visit the Endo and I explain to her that the CGM isn’t accurate for us, we never “treat” based off of the number and really the value of the CGM for us is the trending that it provides. Yet, she has been constantly bringing this up to me in our visits.
So here is what I’ve decided to start doing. I am going to keep a log with the following data:
Date:
Time:
Fingerstick number (PDM data):
CGM number (CGM data):
What this will allow me to do is to BRING PROOF to her that the numbers are many times drastically different and, since she only looks at the CGM data, she’s believing we are low a lot more times than we are. I can provide her with the CGM data and the PDM data and tell her…“Look…here are all the dates/times that the CGM data wasn’t correct. The actual BG from a finger stick was…x while the CGM read y. This results in you believing we’re lower much more often than we actually are.”
I always go there and tell her this, but I don’t know if she believes it because she seems to just kind of nod and yeah yeah when I tell her this happens many times each day for us.
You guys think this would be valuable as a tool to have during our discussions?
It just sucks to already have enough issues with REAL lows, but also to have that Severe low percentage brought down even more with inaccurate readings with the CGM. I want her to understand that the data isn’t always as accurate for us as some of her patients may report.
People who do not use a CGM really have no idea how accurate it is or is not. And it’s different for everyone. Your endo has no idea if it is correct, she is going off some study about CGM efficacy in management of pediatric diabetics, blah, blah, blah.
And it’s accuracy is different for everyone!
It’s like my roommate first 2 years in college. He was a brilliant electrical engineering student, and he had a 4.0 at one of the toughest engineering schools in the country.
One time I had to show him how to jump start his car because his battery had died.
I’m going to start doing that then. I hate going there and KNOWING what I’m saying is correct, but having someone question that. I’ll drop the proof on the table, drop the CGM and PDM on the table and say, "Here, upload the data from both devices and check any of the dates/times in this logbook in both Clarity and Glooka(o) and see for yourself the proof that I’m always telling you is true.
After a while, I think I can discontinue it…but it’s a great way to just show them the proof that I’m not just making up stuff. I get it…I want to avoid severe lows as much as possible…anyone with diabetes tries to do that. But feeling like I’m not believed when I discuss the accuracy of my CGM is frustrating.
Yes! Too bad we don’t have an app that by default shows both CGM and PDM (pump bloodtest, carbs, insulin)! Can you use sugarmate to add bloodtest data? Then you’d have a nice graph to show her. I know you can do this in xDrip+ so that it shows the BGs, and any bloodtests, calibrations, etc., graphically.
Yes, but that’s another manual step…I already have enough things to do during the day and don’t enter anything manually. The PDM records carbs, insulin and I can tag things if he’s sick, ketones, etc., But yes, if there was a portal that captured and combined the data from Glooka(o) and Clarity, that would be nice.
If you need some evidence of CGM/finger stick discrepancies, just let me know. I’ve got binders’ worth. My Guardian obviously held the belt in longest lag (which is why my time in range is so silly), but even my Dexcom reflect different numbers than where I am in reality.
I would also love to correlate all that data, but all the button pushes just make the data cumbersome to input, and realistically I won’t do it after a week. My d-buddy at work did a pilot project for El-Goog that had an app that did all of the above and with only a button push or 2 for insulin, used the phone to track activity and a pic for the food. She loved that app and was very sad when they took it back.
I can see the data (CGM+PDM) together on Diasend. My CGM data updates to Diasend automatically and I just upload my PDM to Diasend to get my fingersticks, carbs, and insulin in there.
I completely understand your frustration. When my BG is low, I treat and check my BG 15 minutes later and it’s on its way up. On my Dex it could show me as low for an hour or more - it seems to take forever for the glucose to hit my interstitial fluid. When my BG is low I never trust my Dex to decide whether I should eat more.
My endo has also made some comments, but I told her that it takes Dex a lot of time to react and that it is incorrectly showing me as low. She was ok with that.
oh and I think ours actually automatically uploads from Apple Health on Samson’s phone, so all I really need to do is upload the pump data using that little BG meter.
Thx, good to know… I was contemplating paying out of pocket for Diasend or Glooko. I love Tidepool , but there are some functionality issues for reporting that i would like to see improved upon in the future that would make them the perfect app for me (got to tell them in person too!)
I agree, Tidepool is really easy to view, but Diasend does have more details.
@ClaudnDaye I don’t think you can connect the Dexcom app to Diasend for auto integration. At least their support page says it is not support in the USA.
Can you use sugarmate to add bloodtest data? Then you’d have a nice graph to show her. I know you can do this in xDrip+ so that it shows the BGs, and any bloodtests, calibrations, etc., graphically.
